Family life

YORKSHIRELASS

Hi, I understand a little where you are coming from and just wanted to send you a hug. When my son was diagnosed with a serious long term illness I imagined there would be all sorts of people coming forward to help and support us. Sadly it isnt like that, there is help out there but it is limited and you have to go and find it (and sometimes fight for it) yourself.

My sons problems are nowhere near as severe as yours (and of course you have two children to deal with) but he hasnt been to school full time for 2 years. His health is simply to poor to attend more than a couple of sessions a day and the consultants cant find medication that will stabilise his condition. He is desperately far behind with his school work and thinks he has no future in life. He cant remember being well and cant see a time in life where he will every be able to get qualifications or a decent job.

We get no support really. I gave up full time work to care for him which is lonely and isolating. I try not to burden my hubby too much because he is out there earning the money to support us all. We rely on the DLA and I am terrified of losing it which I hate, I wish I could go to work and support myself. I also feel guilty that my healthy son doesnt get the time and attention he should, although I try desperately hard to make sure he has a "normal" family life.

Sorry for the rant, I just wanted you to know that you are not on your own. I know the government has very little money at the moment but it seems unfair that you are not getting more help.

leaannep85

Hi everybody, sorry i never came back its been a really tough few weeks it looks like me and my husband will be splitting up, were not coping well at all and i cant see how its going to get better as we dont have time for ourselves never mind each other and the arguments never get sorted before another one starts. we told social services this and asked if we were entitled to respite and were told we have each other so when one is looking after the children the other should rest, which is fine but it means we dont get time for us as a couple and its wrecked our relationship.

in reply to others posts,
steph7163 we asked sure start for help but as its help we need with boys and there over 5 they could not help.

shy-but-need-help, sometimes my dad is selfish i agree but wen he has his episodes the police, mental health team, ambulances, hospital etc have my number as im his next of kin and usually ring me as they cant get through to him (he often believes people are against him, the police have shot his family etc) so although i want to just leave him to it he is my dad and i cant as when he is freaking out he needs me and the police often need me to calm him down, bring him down to saftey etc.

mumoftwo i do get DLA for my children and i would love to be able to employ somebody myself but it is very expensive. i am always looking into groups, after school clubs, holiday groups etc for the boys but nobody will accept them because of there complex needs and because there still in nappies at 6 etc. i would need to employ 2 seperate people to look after each child as this is what is on their statements, the law says etc they need (ironic really when i usually have 3 children and just 1 of me at home day and night) the boys are not even able to go to brownies, swimming clubs, spirts clubs etc as government have cut hekp for disabled children so they go to school then come home and are always with me or their dad and we take them most days swimming, parks etc which takes a lot of money

pigpen you gave lots of helpful advice i have asked social services for respite, direct payments etc they said no -i was told when they turned 6 they would be eligible for somebody to take them to a group they would enjy once a week for 90 mins like swimming, scouts etc but when they turned 6 it was cut and now ive been told when they are 8 they could go to respite 1 night a week, it seems when we get to a certain post it gets moved.

Emmzi

phone social services again.

Tell them you cannot cope and need to discuss either help, or full time care for the kids.

When faced with prospect of finding foster/ respit ecare for 2 disabled 5 years olds (not easy, very expensive) watch how their !!!!!! get in gear.

But you need to lay it on thicker than thick. You get nothing if they think you will struggle on somehow." They need to be clear you are on the edge.

Follow this up in writing, recorded delivery.

If no luck, next stop MP's surgery.

whitewing

Can you contact the school and explain how you are feeling? They may not be able to do anything extra themselves, but they may be able to point you in various directions or help you word your requests more effectively.

msb5262

whitewing wrote: »

Can you contact the school and explain how you are feeling? They may not be able to do anything extra themselves, but they may be able to point you in various directions or help you word your requests more effectively.

Great suggestion but as it's the summer holidays, nobody will be available to the OP.
Maybe she could talk to her GP/Health Visitor?
MsB

pigpen

Get back on to social services they have a duty to help.. that is their job!! Dont speak to the same person!!!

I am with Emmzi.. send everything in writing recorded delivery and imagine everything being as bad as it can be in 1 day and every day.. do not let them think you will struggle on. Get letters supporting your argument from the consultants and therapists and P and school and HV/school nurse. Explain how it is damaging your daughter relationships with you all as well and kep onat them.. ring them every day to see where they are at and what they are doing..

whitewing

msb5262 wrote: »

Great suggestion but as it's the summer holidays, nobody will be available to the OP.
Maybe she could talk to her GP/Health Visitor?
MsB

I think some special schools open year-round.

merlin68

My Dd's special school is open all year round. It costs £8 per session but they take them out, goodrespite care. they take siblings as well. Ring dimensions as they organise this type of care across the country. i had a carer come in for 8 weeks, morning and night from them.
Out and about will also take diabled kiddies outfor you, you have to pay though that is what dla is for.
You can get money for a holiday or days out from the family fund.

helphelphelphelp

Do you have a complex needs service linked to your hospital? When my son was due to come home from hospital they liaised with all relevant departments and also offered to organise respite care. OK, it was only for a couple of hours every other week I think, but still, they are precious hours that you need. May be worth contacting them if you have this team, ours was really good.

whitewing

Rather than trying to sort out some regular time away from the children completely for yourself, which would be quite complicated to arrange right now, maybe you could pay a babysitter to assist you for a few hours a week. Possibly you could get a college or uni student, and it could be relevant work experience for them. I know uni students who are finding it hard to get a part time job at the moment. Obviously you would have to be careful who you employ, but you would be there anyway so it would help. But this may be more affordable for you whilst reducing your burden.